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Description

Introduction: In this episode, we delve into the profound journey of Mary Lou, a dedicated caregiver to her husband, the renowned artist and rocker, Nicholas ‘Nicky’ Zann. Mary Lou candidly shares their story of navigating life with Lewy body dementia, shedding light on the challenges, resilience, and the importance of understanding and support.

Key Points Covered:

1. Understanding Lewy Body Dementia (LBD):

   
   
   
   
   • Mary Lou describes how LBD differs from Alzheimer’s, with fluctuating symptoms affecting memory and behavior. It's a condition affecting 1.4 million Americans and 11 million globally, though it remains relatively less known.
   
   
   
   



2. The Caregiver’s Perspective:

   
   
   
   
   • Mary Lou emphasizes the need to meet the person with dementia where they are, suspending personal needs to prioritize theirs. Caregiving is described as improvisation, requiring adaptability and a willingness to accept failures.
   
   
   
   



3. Lessons in Forgiveness and Vulnerability:

   
   
   
   
   • She reflects on her book, “I Didn’t See it Coming, Scenes of Love, Loss and Lewy Body Dementia,” as a journey of reconciliation with herself as a caregiver. Forgiveness and vulnerability are central themes, offering insights into the complexities of caregiving.
   
   
   
   



4. Nicky’s Messages and Final Moments:

   
   
   
   
   • Mary Lou shares Nicky’s enduring messages and the profound experience of understanding his needs in his final moments. She highlights the transformative potential of grief, turning it into catharsis.
   
   
   
   



5. Raising Awareness and Encouraging Support:

   
   
   
   
   • Mary Lou advocates for greater awareness of Lewy body dementia, urging celebrities and public figures to help shine a light on this condition. She underscores the importance of creating supportive communities for family caregivers.
   
   
   
   

   
   

   
   

   Notable Quotes from Mary Lou:

   
   

   “You have to join the person where they are, you can’t expect them to come to you in their former state. It’s just not possible.”

   
   

   “Suspend what you need and give them what they need.”

   
   

   “Grief doesn’t have to be your nemesis, it can be your
   catharsis.”

   
   

Closing Thoughts:
Mary Lou concludes by emphasizing the moments of light and hope amidst the challenges of caregiving. Her story serves as an inspiration and a call to action for increased understanding and support for those affected by Lewy body dementia.

ABOUT THE AUTHOR & ILLUSTRATOR

Mary Lou Falcone is internationally known as a classical music publicist/strategist who for 50 years has helped guide the careers of celebrated artists – Van Cliburn, Gustavo Dudamel, Renée Fleming, Sir Georg Solti, James Taylor – and advised many institutions including Carnegie Hall, Chicago Symphony, Los Angeles Philharmonic, Philadelphia Orchestra, New York Philharmonic, and Vienna Philharmonic. Combining communication skills with her background as a performer and educator, she now adds another layer: advocate for Lewy body dementia (LBD) awareness. Her late husband, the illustrator Nicky Zann, who died from LBD in 2020, was the catalyst for this, her first book.

Nicholas ‘Nicky’ Zann, the inspiration for this book, was a popular 1950s rock ’n’ roll musician who became a world-renowned cartoonist, illustrator, and painter. His work hangs in the permanent collection of London’s Victoria and Albert Museum, and the illustrations featured throughout this book come from his bestselling fortune-telling card game, The Answer Deck.

Visit Mary Lou's website HERE.

Buy her book HERE.